Caden’s Crew 2017 Walk

Each year for the past 4 years, our family has come together with other heart families and walked with Big Hearts to Little Hearts. The walk raises funds and awareness that support the littlest heart patients, like Caden. In 2013 we walked for the first time and pulled Caden along in a wagon. He was 15 months old but hadn’t yet learned to walk after having two open heart surgeries. In 2014, he happily trotted alongside us all. Each year, watching him walk/run/weave/whatever down the Manasquan boardwalk, I have to hold back a few tears. I want every heart mama to have that feeling of overwhelming joy watching her heart warrior LIVE. I want every child born with congenital heart disease to have the same opportunity as Caden to receive quality care and to LIVE each of their lives to the fullest. 

Every time I hear a story about a baby born with CHD that was undiagnosed in utero, or a baby going home with an undetected heart defect only to  be back in the hospital a few days later, or a teenager collapsing at a sporting event due to an undiagnosed underlying heart defect, I know there is more work to be done. Because of these all too frequent stories, we are advocates of early detection and research that prolongs and betters the lives of all children with CHD. The BH2LH annual walk directly benefits the Cardiac Center at the Children’s Hospital of Philadelphia, funding important research and programs at this top-rated pediatric cardiac facility.

Thank you for reading this and for considering a donation to this cause so dear to the hearts of our family. Caden thanks you from the bottom of his heart for helping to give the gift of hope and life to other children just like him. 

Thank you for your support! 

xoxo, The Josephs 

Melanie, Michael, Serafina, Phoebe and Caden

 

Here you can read about Caden’s story: On July 24, 2012, Caden was born in the CHOP Garbose Special Delivery Unit with d-TGA, VSD and PS. (Which means that his aorta and pulmonary artery were switched from the way they need to be for proper function, he had a hole between the lower chambers of his heart, and a narrowing of his pulmonary valve). We knew about this since 19 weeks into the pregnancy and received regular prenatal care from cardiologist Dr. Goldberg and a team of other doctors and nurses in the CHOP Fetal Diagnosis and Treatment Center. Most often TGA is corrected within the first week of life by a procedure called an arterial switch and we hoped for him to undergo this surgery after birth. When he was first born at CHOP, Dr. Glatz performed an atrial balloon septostomy to create a hole (an ASD) between the upper chambers of his heart. With the two holes in his heart – his ASD and his VSD – his blood could mix and become oxygenated enough for him to be stable. At first we still hoped for an arterial switch procedure to correct his d-TGA, but within the first days of his life we discovered that his PS was too severe and he was not a good candidate for a switch procedure. We planned for him to have a different repair procedure between four to ten months old. With his oxygen levels hovering around 80%, we left the hospital at five days old with a pulse ox machine, a bunch of nerves and a lot of hope. After a few months it was clear that Caden’s oxygen levels weren’t going to remain high enough for everyone’s comfort. When Caden was four months old, Dr. Spray put in a BT shunt which increased his pulmonary blood flow and increased his oxygen levels. That worked well and after a five day hospital stay we were home. Now the plan was to move his full repair surgery to about one year old. Growing bigger meant growing stronger which is a benefit for any cardiac surgery if you have that luxury. On August 1, 2013 Caden underwent his “big” surgery for his full repair. Dr. Spray removed the BT shunt, closed the ASD, and performed what’s called a Rastelli procedure to correct the d-TGA. In brief, by baffling Caden’s VSD with a GoreTex patch, blood is directed from his left ventricle to his aorta properly. Then a new valved conduit is inserted to establish continuity between the right ventricle and the pulmonary artery. Once again we were discharged in five short days after this amazing heart reconfiguration. Caden will outgrow that conduit at some point later in childhood and need it replaced to grow into adulthood. But we are hopeful that the hardest, biggest surgery is now behind us. Since Caden’s big surgery, his regular cardiac follow-ups have all been great. His heart is strong, he is thriving and is meeting all of his normal developmental milestones. This year, Caden just started full day Kindergarten! We are walking to celebrate Caden’s amazing heart and so that every child with a congenital heart defect may receive the same excellent level of care as Caden!